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Blood clot in neck from portacath - slept on right side (Recap of Lost Posts, Created by zsazsa on Nov 04, 2018)

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Posts: 470
Joined: Jan 2018

Feb 08, 2019 - 3:31 pm

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

zsazsa1

Nov 04, 2018 - 6:55 am

Yesterday it finally dawned on me that the persistent tenderness in my right neck could be from a blood clot from the portacath. I tend to sleep curled up on my side. I tried to avoid sleeping on my right side for two days after catheter placement, but after that, I did, probably half the time. And for the days I was sick after chemo, I spent a lot of time in bed, curled up on my side. Unfortunately, I realized too late in the day for me to just have an ultrasound done as an outpatient, so I had to go the ER in order to get the ultrasound done, so what should have been a half hour appointment turned into a six hour ordeal, with labwork. The tech was excellent, was able to visualize the entire clot, that the clot was only in the internal jugular vein, not into the subclavian, and didn't extend back into where the catheter actually is, which is great, because if there were clot around the catheter tube itself, I might have to have the cath removed.

I really wanted to be able to just go on one of the new oral anticoagulants, instead of the daily shots of Lovenox, and fortunately, when we were finally able to reach whoever was on call for my oncologist, he agreed with that, so I just have to take a pill, not a shot. What's upsetting to me is that being hypercoagulable like this is much more likely when one has distant metastases present - and my biggest fear is that I am really stage IV, that the workup missed metastases. I'm hoping that the clot was just because of the portacath and my scrunched up on my right side sleeping position. I'm never gonna sleep on my right again, as long as I have that portacath in!

Good news is that, when the bloodwork came back, it showed that my renal function is still great. I was very surprised to see that my total white count and absolute neutrophil count were BETTER than 30 hours beforehand. I'm only a little over a week out from first round of chemo, and I thought that the nadir comes about 21 days out, and that there would be a steady decline. Maybe just a fluke, but I get counts done again in a week.

Weird thing. I feel much better this morning, after having started on the oral anticoagulant. Neck pain almost gone, but the weird thing is that hot cough is gone, and I have more energy. I wonder if I had very small pulmonary emboli, that my body is clearing now that I'm anticoagulated.

What a bummer (to say the least)! So sorry, but glad you got taken care of. For what it's worth, I have seen a number of women post about having post op blood clots, and they didn't have metastatic disease.

I always had my CBC 10 or 11 days after chemo, and I was always neutropenic on that day, progressively more so with each cycle, and always recovered by my repeat CBC the day before the next chemo (21 days apart).

Thank you for that reassurance, Lisa. I had an amazingly good day today - plenty of energy, walked dog twice, vacuumed, went out, ate like a horse, with appetite, for the first time since a week before the surgery. No cough. It's almost as if the Xarelto is acting like a stimulant. I really wonder if I had microemboli in the lungs.

I'm just so glad I was able to keep the port! I was so afraid they were going to say that it had to be taken out. Fortunately, there is no sign of infection, and it's amazing how quickly it's improving. There is almost no neck tenderness now, and I've only had two doses of the medication.

Lady, I hope you had the same beautiful weather where you are that we had today in the Northeast, and that you got a chance to go outside some. I find that being outside, with the changing foliage, in sun, is very good for the soul.

Zsa, did anyone tell you not to sleep on your right side? I've had my port for almost a year and a half, and I do worry about clots, but I sleep on both sides all the time and always have....

My nadir was at 10 days between chemos, and I did become neutropenic after the third chemo, so for 4, 5 and 6 I had neulasta shots. No ill effects from those and much benefit. As far as your stage, try to save your strength from worrying about that, because no matter what stage you are, right now you are doing exactly what you should be doing, which is chemo.

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